How did your neuropathy start out?

Im in limbo land and trying to find out if my problems are neuropathy or not. Does neuropathy start out as pain first, weak muscles, then tingling and numbness? For a year I had weak muscles and my hands, arms, legs, feet then it went to pain after using them. Now after I had some muscle tension from doing an elliptical machine too long my nerves flared up and my whole body felt like it was on fire. Numb when pressure is applied, when laying down or sitting down too long. Now the body burning is gone but it will still happen if a lay on my neck a certain way.
So is this a normal presentation of neuropathy? Starting out with muscle fatigue, pain and then numbness that comes and goes when pressure is applied. Please help.

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bettyjoy2345 (05-10-2013)

sounds pretty much like it to me. Not every person's experience is identical.. often close though. Best to start with talking to your GP and go from there. He/she may refer you to a neuro doc. I've yet to see my first neuro dr because the wait list is so long.

__________________

"It's how we treat the humblest among us that surely determines the fate of our souls." --Dean Koontz.

Thanks for your response. What is yours like? I have seen a neuro once and he was a JERK. He first asked how things were at home. Then he said maybe I had a carcinoid tumor since I had facial flushing, so he tested me for that, negative thank God. So after I passed all his test in the room he just stared at me and said, well you dont want to have something wrong with you do you, so maybe it will just go away. And that was that, he did blood work but no testing. I left crying. So Im trying to see another neuro, we will see. So my reflexes, vibration/ sensation, strength balance etc. Is normal the only thing is plantar reflex was absent. He dug his key into my foot which hurt like crap but my foot didnt move, he didnt say anything but he did it a few times. So I dont know if its normal not to have a reflex? Good luck with your neuro exam, and make sure you see a good one.

my neuropathy started out as tingling with no pain on the bottoms of my feet. since i could not see any problem i thought it might be athletes foot. so i went to the foot dr and he confirmed it wasn't that and did a simple test and said i should see a neurologist. i saw a neurologist and did a emt and multiple test (blood and others) and confirmed it was neuropathy . he started me a a long trial of different drugs. i went to the mayo clinic in minnesota for a 2nd opinion. they ran a battery of tests for 2 days. now 10 years later i have neuropathy full blown in my both hands and both feet. i have a regiment of drugs, am disabled by pain, and i take life one day at a time. everyone has different symptoms and they can mimics different diseases. the first place is the neurologist if you should suspect neuropathy.

If you can pin down the source of your neuropathy, that would be very helpful. For some people, it's a problem with their back. For others, it's something that started after surgery. And still others, it's as a result of a disease such as diabetes. Sometimes it's more than one thing (ex. spinal stenosis and diabetes.) Knowing the source or at least how and when it began might point you to something you can do to minimize the neuropathy. That could be to avoid certain movements, or certain activities.

For me, it began after knee surgery. I was already on Neurontin for management of migraines, so my neurologist upped the dosage I was on. I also take Mirapex for restless legs. The meds help, but they certainly do not eliminate the pain. Evenings are the worst, especially after I sit for a while and elevate my legs on the recliner, or when I am in bed. Something about the adjustment of blood pressure, I think.

In any case, a good neurologist should be able to help you. If you are not confident in the neurologist you are about to see, don't hesitate to move on to another one, and another one, until you find someone who will listen to you, treat your symptoms successfully, and always take your complaints seriously.

I wish you good luck.
FF

__________________Best wishes to all, FleaFly

"The way I see it, if you want the rainbow, you gotta put up with the rain." ~ Dolly Parton

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mustang06 (05-04-2013)

Thanks fleafly. Sorry about your neuropathy. I think mine is my back but a few doctors told me it couldnt be the bulging disc in neck and back causing this. I think its muscle spasms compressing my nerves. Everything I read says most neuropathy starts out in hands or feet if its a disease or illness causing it. Plus numb or loss of feeling first, which mine is not. The first neurologist was a jerk so im seeing another one. The first guy told me mabey it was depression, so im frustrated. Yes, now im depressed bc I feel like crap!! Anyways thanks for your response, good luck with to u too, and maybe since yours is from surgery yours might get better. Nerves can regenerate.

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fleafly (05-05-2013)

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fleafly (05-05-2013)

Hey Mustang, Nice words from you. Thanks. My neuropathy definitely originates from my knee. It has not gotten better. Worse, in fact. So much so that it has been a major contributor so my severe foot problems. Nonetheless, I am glad the neuropathy did not originate in my back or from diabetes. I wish you well, and will be happy to hear how you are doing in the weeks and months to come.

FF

__________________Best wishes to all, FleaFly

"The way I see it, if you want the rainbow, you gotta put up with the rain." ~ Dolly Parton

you may want to keep record of what triggers the pain and the level of pain. this sometimes helps with the doctor visit. be patient sometimes it takes several diffrent doctors visits to find that one that is willing to help

Im in limbo land and trying to find out if my problems are neuropathy or not. Does neuropathy start out as pain first, weak muscles, then tingling and numbness? For a year I had weak muscles and my hands, arms, legs, feet then it went to pain after using them. Now after I had some muscle tension from doing an elliptical machine too long my nerves flared up and my whole body felt like it was on fire. Numb when pressure is applied, when laying down or sitting down too long. Now the body burning is gone but it will still happen if a lay on my neck a certain way.
So is this a normal presentation of neuropathy? Starting out with muscle fatigue, pain and then numbness that comes and goes when pressure is applied. Please help.

Hi. My symptoms were that my back and the back of my arms were on fire. Sleep was a nightmare or leaning back in a chair. Also excessive sweating. I'm 53 and had already gone through menopause. First they tried Hormone Replacement, but that didn't help. Saw an idiot Neuro who said depression. Saw a different Neuro. My feet were starting to get hot too, so it was easier to diagnose. Have the biopsy, and tested positive for SFPN. I've been on a variety of meds and am seeing another Neuro who specializes in this to hear what he has to say. One thing I do suggest. I bought this cooling pad for the bed by chili technology. This is a miracle. I can adjust the temp cool or warm and my back doesn't burn. A bit easier to sleep. The Cymbalta has greatly reduced the sweating. My legs burn, feel weak, swell and get numb. I dress like its 90 degrees and then freeze. My body temp is all messed up.

Suziecue- that sounds a lot like me. Did u have a normal neuro exam? I feel as if mine is from poor posture straining my muscles lifting my toddler, who is 35lbs, I have muscle tension knots in ny back and neck then it all started. I really hope its not something permanent. I just thought most neuropathy started in hands and feet, thats why I posted this. I guess in your case it didnt. I hope they find out what caused your so you can stop it. I was talking cymbalta but my heart rate went sky high. But I use ice packs when Im hot. Ill have to get what you have for the bed. Thanks for your response and good luck.

My neuro exam was near normal. Good muscle strength, felt a wee bit less sensation in my fingers. Note that my SFPN is considered atypical as most who have the biopsy have thinner skin near their feet and thicker in their thighs. I have it reversed, which explains why I started with the trunk (my back) burning instead of feet first.

I'm also new to the boards. Have recently bought Benfotamine, some version of vitamin B1 that many talked about and Mortons Epsom Lotion that others talk about. Cheap enough and way too soon to tell you if it makes a difference. As the first of my calves burn, I also heard there might be a topical Neurontin lotion to use. I gained weight with that med, figure this might be a better way. I admit I am lucky to live in NYC where there are many MDs. Happy to share the results of my soon to be MD visit with you if I learn anything new. My visit is May 17.